Friday, August 29, 2014

Battling Parkinson’s Disease

Colorado patients fight for the best possible life

By Electa Draper

Kirk Hall reflects on his battle with Parkinson’s disease at his home in Highlands Ranch on Tuesday. He wrote a book called “Window of Opportunity: Living with the Reality of Parkinson’s and the Threat of Dementia.” Cyrus McCrimmon, The Denver Post

A diagnosis of Parkinson’s disease is devastating and brings with it a steep learning curve. If climbed, patients say, life can be good.

Amid speculation that a recent diagnosis of Parkinson’s, or depression associated with it, might have been a cause for Robin Williams’ suicide, local patients with the disease expressed dismay that it may have felt like a death sentence for the iconic actor-comedian.

“It would be awfully sad, but we don’t know,” said Kirk Hall, who learned he had Parkinson’s in 2008 at age 59. “When I was first diagnosed, I was really down about it, but you have very little information at that point.”

Parkinson’s, a slowly progressive neurological disorder that disrupts movement, muscle control and balance, is known by many for its classic symptoms: tremors, slow motions, unsteady or shuffling gaits, erratic movements, slurred or soft speech, difficulty swallowing, and rigid limbs, neck and trunk.

About 1 million Americans and an estimated 17,000 Coloradans have Parkinson’s. It’s not fatal but can reduce lifespan. The Centers for Disease Control and Prevention rate complications from the disease as the 14th leading cause of death in the United States. After Alzheimer’s disease, Parkinson’s is the most common neurodegenerative disorder, with an estimated lifetime risk of about 1 in 100 persons.

More men get it than women, and the average age of onset is 55. About a third of cases appear to have a genetic basis. Caucasians are at higher risk, while both smoking and coffee drinking have been associated with lower risk for the disease.

“Parkinson’s is such a weird disease,” said Kari Buchanan, spokeswoman for the Parkinson Association of the Rockies. “Not everybody has the same symptoms.”

About a quarter never get tremors, she said.

“The disease and treatment are different for everybody. There is no carbon copy here. It can take years to diagnose,” Buchanan said.

The cause of Parkinson’s isn’t known, but it kills brain cells that release an essential neurotransmitter, dopamine. A hallmark trait is the presence in the brain of a protein called alpha-synuclein, a major constituent of pathological clumps called Lewy bodies. Despite research focused on these proteins, answers, fixes and funding are in short supply.

Rebecca Rothwell, diagnosed with Parkinson’s at age 56, said she first felt isolated and discouraged.

“I had friends practically giving me a wake,” she said.

But in April, at 63, she underwent a surgical procedure for deep brain stimulation at Littleton Adventist Hospital. Electrodes were implanted in a targeted area of her brain and later connected to a small, battery-powered electrical-pulse generator implanted near her collarbone.

“In March, I thought I was going to be in a wheelchair. I was ricocheting around the kitchen, shaking like a leaf,” she said. “They turned on the electricity April 29. In early June, I walked from Frisco to Copper Mountain. I’m mowing, gardening, everything. I’ve got my rhythm back.”

Deep brain stimulation, or DBS, isn’t the answer for everyone. While 30 percent to 40 percent of Parkinson’s patients might realize benefits, only about 10 percent undergo the procedure approved by the Food and Drug Administration in 2002, said neurosurgeon Dr. Aviva Abosch at the University of Colorado Hospital.

The current gold-standard treatment of Parkinson’s is the drug levodopa, which increases brain levels of dopamine, combined with carbidopa, which slows the breakdown of levodopa. Brand names include Sinemet and Atamet. The drugs are effective in about three-quarters of cases, according to the American Academy of Neurology.

The drugs’ side effects can include dyskinesia, the loss of muscle control that can exhibit as flailing arms and legs and other rapid, repetitive motions. DBS can improve motor function and squelch dyskinesia.

Hall underwent DBS surgery in 2011, and the implanted device has calmed his tremors. He and his wife and “care partner,” Linda, carefully manage his medications, nutrition, exercise and rest.

For Hall, the worst effects of Parkinson’s are not the tremors or other motor-control problems that medication and surgical therapies can reduce or eliminate for an indefinite period of time — but rather the cognitive impairment.

The Halls have trained at the National Institutes of Health in research and patient advocacy. His work to help other Parkinson’s patients has given him his greatest sense of purpose, he said.

He says patients should seek out a neurologist who specializes in movement disorders. He also recommends a DBS support group called The Bionic Brigade of Colorado.

“We’re entering an age in which it wouldn’t surprise me if we saw a cure in 10 to 15 years for neurodegenerative diseases, but no one has cured them yet,” said Dr. Benzi Kluger, neurologist and director of the Movement Disorders Center at the University of Colorado.

Kluger met Hall in 2008, four months into his new neurology job at CU. Hall and others inspired Kluger to start one of the country’s first team-based palliative-care clinics to relieve the suffering of Parkinson’s patients.

The team includes physicians, nurses, psychologists, social workers and a chaplain.

Thursday, August 7, 2014

I am happy to report that Window of Opportunity is on the recommended reading lists for the Parkinson Disease Foundation, National Parkinson Foundation, Michael J. Fox Foundation, and the Lewy Body Dementia Association. Below is an updated list of responses received to date:

Reader Comments

"This book by Kirk Hall with a forward by Benzi Kluger, M.D.
offers a real-world honest and helpful window into the life of a Parkinson's
disease patient who is experiencing cognitive challenges. There are many
useful tips, and also many great stories that will provide comfort to both
Parkinson's disease patients and caregivers. This is just terrific and a
really important contribution to the literature. I highly recommend the book."

Michael
S. Okun, MD

Medical Director, National Parkinson Foundation

Professor of Neurology

University of Florida

“Kirk Hall delves
into the frightening possibility of developing dementia as his Parkinson’s
disease progresses. Candid, insightful, and forward-thinking, Kirkdemonstrates through his book and his
advocacy that cognitive impairment in Parkinson’s disease is not an end to
life, but simply a turn in the road that must be negotiated and accepted, but
not surrendered to. Window of Opportunity is a must-read for anyone concerned
about cognition in Parkinson’s."

Angela
TaylorDirector of
ProgramsLewy Body Dementia Association

“I
just opened the first chapter about 2 hours ago and couldn’t stop….I just
finished it. It is an excellent book!”

Carol J. Walton

CEO, Parkinson
Alliance

"Window of Opportunity" is a unique,
first-hand account of the "in between time" that comes upon
acceptance of a diagnosis and before succumbing to an illness. This thoughtful,
unflinching narrative explores the author's journey from his diagnosis of
Parkinson's disease in 2008 through his research into the mysterious threat of
cognitive dementia in his future.

When my mother was diagnosed with Lewy body
dementia, I searched for a book like ‘Window of Opportunity.’ It is a
touchstone for those struggling with a dementia diagnosis and the people that
love and care for them.”

Leigh Ramsey

Daughter who lost her mother to LBD

“Initially
I was apprehensive about reading the book, Window
of Opportunity: Living with the Reality of Parkinson’s and the Threat of
Dementia by Kirk Hall. I was afraid that the book was going to focus on the
uncertainty and threat of dementia that sometimes accompanies Parkinson’s. I
was delighted to see that there is no gloom and doom in this book.

Kirk
was courageous to tackle these sensitive topics. When he expressed his fears,
it helped us to articulate and accept our own concerns and worries. We are no
longer alone on this treacherous path.

Kirk’s
writing style is personal and honest like a memoir, and also filled with
factual information and stories about Parkinson’s and dementia. He is
determined to erase the stigmas of these two diseases in our society.

Kirk
demonstrates that we can have a meaningful, purposeful life, despite
Parkinson’s, dementia or whatever maladies come our way. His book was
inspirational and motivated me to move upward and onward. I highly recommend
it.”

Kate
Kelsall

Co-Founder and President of DBS Voices
of the Rockies,

Co-Founder and Co-Leader of the Bionic
Brigade DBS Support Group

Parkinson’s blogger: Shake, Rattle,
& Roll

“Just finished reading the manuscript and can truly say what a wonderful book this will be for so many people…PWP, family members, caregivers. It was an easy read, honest, ‘story like’ which, for me, lends itself to being a page-turner. You could truly hear your voice, the passion and desire, to help educate others.”

Cheryl Fortunato

Daughter
of an LBD patient

“Your book is an excellent piece of
work. I particularly enjoyed reading about your history and your approach
to handling the difficult things God has allowed you and your family to
face. The chapter on faith was inspiring and very humbling. I can only
imagine how useful this book will be to a large number of folks who are facing
similar situations.”

Rich Carnahan, Ph.D.

Stephens Minister

Retired Aerospace Engineer

“Window of Opportunity is the story of one person’s journey through the
initial signs of cognitive impairment brought on by Parkinson’s disease and the
uncertainty of a future that might include dementia. Kirk Hall, only 58 at the
time he began noticing small signs of mild cognitive impairment, tells his
story with directness, candor, sensitivity and humor. He describes the
long and seemingly endless visits to doctors seeking answers to his disturbing
symptoms and the confusion caused by conflicting opinions about the progression
of his disease. His copious notes on his symptoms and mental state allow him to
describe in vivid detail his slowly coming to grips with disability and the
increasing lifestyle changes required to offset progressive cognitive
difficulties. He shares the internal struggle, anxiety and stress that
uncertainty causes, not only for himself but for his family as well.

The book is a tribute to someone who is able to maintain
a positive orientation despite the threat of something as devastatingly
frightening as dementia. It is also a journey of discovery as Kirk
transitions into the healing aspects of giving back to the Parkinson’s
community through helping others and sharing his story. Indeed the reader will
take away important insights into the importance of keeping a patient journal,
patient self-advocacy, and shared decision-making. And, perhaps most powerful
of all, are the insights into how a potentially disabling diagnosis can be a
“window of opportunity” to contribute in a meaningful way to the body of
knowledge about a disease and to help others on the path.”

“When
Jim and I met Kirk Hall at a Parkinson’s conference in Colorado, we were
impressed with his obvious intelligence and knowledge. When I read his book,
that was confirmed, but most of all, I was impressed with his courage and
determination. Like others facing dementia, he found himself alone. Even his
wife could see only the positives at first. Yet, he motored on, seeking a
diagnosis that fit his symptoms. In the meantime, Kirk’s book shows that he did
all of the physical things that help to keep dementia at bay—things like
exercising, yoga, eating right and decreasing stress. But he did more. He moved
closer to his grandchildren, increased his focus on spirituality and reached
out to others, teaching and sharing. And then he started writing, joining that
small group of men like Dr. Thomas Grayboys, Rick Phelps and Charles Schneider
who tell about dementia from the inside out. As caregivers, Jim and I can only
write about dementia from the outside in. We join all dementia caregivers in
our gratefulness to men like Kirk who give of their very soul as they tell us
what it is like to feel dementia encroaching. Thank you, Kirk, for your
heartfelt story. We recommend it to not only all PD and LBD caregivers, but to
the medical community as well.”

Helen &
James Whitworth

Authors,
A Caregivers Guide to Lewy Body Dementia

“I was impressed by the amazing relationship that you
have forged with Dr. Kluger, one more akin to a relationship of equals than I
have ever witnessed between a doctor and a patient. This is a tribute to
both you and Dr. Kluger. I sincerely
hope that you have many years ahead of you to write, speak and contribute to
the Parkinson’s community. I also send my best wishes to Dr. Kluger with
respect to his exciting new venture in establishing what is, to the best of my
knowledge, the first palliative care clinic devoted to PWPs in the country at
the University of Colorado Hospital.”

Tuesday, August 5, 2014

During October 2013 I posted an article on highlights from the recent World Parkinson Congress (WPC) in Montreal. Here is a segment of that article:

We (Linda and I) arrived on Saturday before the Congress started in order to participate in the Parkinson Disease Foundation (PDF) Parkinson Study Group (PSG) meetings. There are seven different research groups that address a variety of different PD categories. This year for the first time, we were invited to participate along with other PAIR (Parkinson Advocates In Research) members to provide "patient input". We sat in on the Neurosurgical group and Cognitive/Psychiatric group meetings and appreciated the opportunity to interact with doctors and researchers from all over the U.S.This new development is part of movement toward more patient engagement in the PD world. It is encouraging for PWPs like me that there is a recognition of the value of including patients in the research process as well as placing an emphasis on patient-centered approaches to medical services.This new direction in healthcare, which was very exciting for many of my fellow PWPs who had campaigned for the medical community to place greater emphasis on the value that can be provided by patients and caregivers, apparently flowed out of the patient-centered outcomes provision of the Affordable Care Act that became law in 2010. As a result, the Patient Centered Outcome Research Institute (PCORI), was established in late 2010, and made research grant funding available consistent with their mission statement:The Patient-Centered Outcomes Research Institute (PCORI) helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader healthcare community.PDF works closely with PCORI in conjunction with it's PAIR program. A PWP friend and PAIR colleague in the Denver area, Diane Cook, who is also a member of the PDF People with Parkinson's Advisory Council, established a new program with Dr. Benzi Kluger, head of the University of Colorado Hospital (UCH) Neurology department, that is being funded by a PDF grant. The program involves Denver area PAIR associates working with UCH neurology researchers for a 1-year period in order to evaluate objectively the value of patient participation in research.I have the honor of working with my doctor, Benzi Kluger, (who kindly wrote the foreword for my book, Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia, on the planning and implementation of a patient-centered clinical research project that will focus on the PD palliative care process. It is hoped that this will lead to identification of specific, actionable opportunities to improve patient care and quality of life for PWP's, caregivers, and their families starting at diagnosis and ending with the death of the patient. A patient advisory council has been established to provide input throughout the research planning and implementation process. I will provide more information about this project in the future.

Incidentally, these programs will be telecast to the Durango support
group on Tuesday, August 26. There may eventually be a recording of these
available online...​

Michael J Fox Foundation Coming to Denver! PART IIn September, the Michael J Fox Foundation will visit the Movement Disorders
Program at the University of Colorado. This is a daylong event (9-4:00 PM)
featuring lecturers from the University as well as from the Michael J Fox
Foundation. Marketing is just getting underway but I've attached a "save the
date" flyer. Space may be somewhat limited so if you're interested, I would get
in contact with them as soon as possible. The contact person is Sarah Rogers (Sarah.Rogers@UCDenver.edu).E3 Conference with the Parkinson Association of the Rockies On Friday, October 17, the Parkinson Association of the Rockies will be
hosting their second "E3" conference. E3 stands for "Educate, Empower and
Energize" and this year's program features a mix of panelists and presenters.
The featured guest this year is John Argue (www.johnargue.com), author of "Parkinson's Disease and
the Art of Moving" (available at Amazon http://www.amazon.com/Parkinsons-Disease-Moving-John-Argue/dp/1572241837).
John Argue approaches elements of the disease by drawing upon his background in
theater, which gives him a very unique perspective. He is a highly sought-after
presenter and always a crowd pleaser. This program is tentatively set to be held
at the Doubletree in Westminster, which should make it more accessible to some
folks up north. I highly recommend you put this date in your schedule so you
don't miss this fabulous program.http://www.parkinsonrockies.org/community/event-calendar/icalrepeat.detail/2014/10/17/2301/-/e3-conference-educate-empower-energizeMichael J Fox Foundation Coming to Denver! PART II

Finally, there is a tour associated with the Michael J Fox Foundation, who
have partnered with Abbvie Pharmaceuticals (manufacturer of the soon to be
approved in the US duodenal pump system, DuoDopa"). The program, called
"Partners in Parkinson's" will be another daylong event, held at the Denver
convention center on Saturday, November 8, 2014. The program will feature
speakers from the Michael J Fox foundation and beyond, including content from
Colorado's own, Davis Phinney Foundation for Parkinson's.For more information, visit their website...https://www.partnersinparkinsons.orgspecific information about the Denver event is available here (be sure to
scroll to the second page).https://www.partnersinparkinsons.org/attend-an-event#upcomingEventsAnchor

Order Carson and His Shaky Paws Grampa

Order Carina And Her Care Partner Gramma

Who is Shaky Paws Grampa?

“Shaky Paws Grampa” is Kirk Hall, author of Carson And His Shaky Paws Grampa and patient perspective Parkinson’s advocate. His personal experience as a PWP includes

support group meetings, two visits to the National Institute of Health’s National Institute of Neurological Disease & Stroke to participate in clinical research studies, participation in workshops at the Southeast Parkinson’s Conference, participation in clinical research studies, and joint presentations with movement disorder specialists to support groups sponsored by the Parkinson Association of the Rockies (PAR) and University of Colorado Hospital. Kirk has been a guest speaker at the Muhammad Ali Parkinson Center in Phoenix and other events in the Denver area. He and his wife of 43 years, Linda, are PDF Clinical Research Advocates.